By Fred Ezeh, Abuja
A new study report by Nguvu Change Leaders has revealed the urgent need for a national legal framework on Sickle Cell Disease (SCD) in Nigeria.
The report, titled “A Comparative Study of Existing Sickle Cell Laws in four Nigerian States,” launched during the Sickle Cell Awareness Month in September, sheds light on the lacuna in the premarital genotype testing laws and the lack of awareness about SCD, particularly in the states studied.
The study covered the states of Anambra, Kano, Kaduna, and Abia, revealing significant disparities in public awareness and the effectiveness of state laws.
The study revealed that while Anambra has benefited from active advocacy, resulting in better-informed citizens, Kano, Kaduna, and Abia, suffer from alarmingly low awareness levels.
Nguvu Change Leader, Onor Obassi-Tawo, said the report comes at a pivotal moment, coinciding with national discussions on creating a unified framework for SCD management.
He said: “Our findings highlight the urgent need to address these gaps to better improve outcomes for SCD patients across Nigeria. While the Federal Government’s initiatives like newborn screening and sickle cell centres are commendable, a massive investment of resources and a concerted effort is needed to address the burden of SCD.
‘With 4-6 million Nigerians carrying the sickle cell trait, legislative intervention must complement treatment and care. As the Nigerian Senate, for the third time, deliberates on the proposed National Bill to address the management of Sickle Cell Disease (SCD), we would be glad to offer suggestions and contributions. The National Act could provide a balanced template for states to follow, ensuring both public health and individual freedoms are respected.”
He, however, said the key findings of the study indicated a significant variation in awareness regarding state laws related to premarital screening across different regions. “For instance, in Kaduna State, respondents displayed a notable lack of awareness about the mandatory premarital screening law, indicating a potential gap in the dissemination and implementation of the legislation within the state.
“In Anambra State, considerable awareness of the state law on genotype screening was noticed, attributed to ongoing advocacy efforts by the SCD community (including NGOs). Three of the four states surveyed showed very poor awareness levels of the Laws.
“Each state demonstrated varying degrees of implementation and interpretation of the Law. But despite the existence of the policies, the actual enforcement and execution of the laws remain inconsistent across these regions. The absences of a standardised legal framework led to differing approaches and varying levels of enforcement across the states where these laws had been enacted.”
The report further highlighted a severe crisis in the availability and affordability of genotype screening, especially in rural areas. It revealed that many Primary Health Care (PHC) centres lack the necessary resources, thus driving up costs and limiting access to essential screenings.
“This, combined with infrastructure and funding deficiencies, severely hampers Nigeria’s healthcare system’s capacity to offer early detection and effective management of SCD. Also, deep-rooted socio-cultural and religious beliefs have also discouraged genotype screening and promote traditional practices over genetic compatibility in marriage.
“These factors contribute to the low acceptance of premarital testing, impeding public health initiatives. Additionally, individuals living with SCD face significant stigmatisation, which not only diminishes their quality of life, but also discourages them from seeking necessary medical support.”
The survey, thus, recommended enhancing public awareness, engagement with religious and cultural leaders, universal health care and accessibility, establishment and enforcement of ethical guidelines, among several others.
The Nguvu Change Leader further noted that the recommendations could provide a crucial roadmap for policymakers, as they work to develop a comprehensive national framework to reduce the burden of SCD in Nigeria, which remains one of the countries most affected by the disease globally.
